An uncommonly clever, insightful, and funny voice of reason* in all this multiple sclerosis silliness

Wednesday, June 15, 2016

Giving it a Shot

Selfie with the Space Needle

When the FDA approved Zinbryta (daclizumab) last
month, one line in the FDA press release “stuck” out to me: “long-acting
injection that is self-administered by the patient monthly.” Injection.
Self-administered. In other words or in plainer language that anyone with
multiple sclerosis can understand, the FDA is referring to SHOTS. There is a
reason I’ve written that in ALL CAPS. Because for years, shots have FREAKED ME
OUT. And just when it appeared giving yourself a shot for your MS was going the
way of the dodo and of friends to invite over for dinner who consume gluten,
this news drops.

For some, shots are fun. The band LMFAO is famous
(infamous?) for singing about shots. Steph Curry, Ronaldo, and Ovechkin all
enjoy taking shots. Ansel Adams was a shot expert. Katniss Everdeen has an
awesome shot. Me? I’m not a huge fan. Since childhood, I’ve tried to follow a
general rule: AVOID SHOTS. Getting diagnosed with multiple sclerosis ten years ago,
though, sure mucked that up. My options back then: a daily shot, a few times a week
shot, or a weekly shot—with a needle so large you might mistake it for a
Seattle landmark.

Now if you think I am exaggerating my fear of
needles for the purposes of blog humor, you would be wrong. I gave up watching
medical shows years ago because of needles. I cringe and close my eyes if I
catch a glance of someone getting a tattoo, even a tattoo of a cute, carefree dolphin
with sparkles and rainbows. Heck, I’ve weighed the benefits/drawbacks of
lockjaw to argue the possibility of evading a tetanus shot.

Ovechkin likes to take shots and give them.

So when I gave myself my very first shot over a
decade ago, it was an experience that I’ll remember forever. And,
unfortunately, so will poor Laura and the 5-foot-nothing Panamanian MS nurse who
had to prop up my lifeless body. Apparently, at the time my brain was not comfortable
with the fact that I was sticking a SHARP NEEDLE into my PRECIOUS SKIN and then
INJECTING MEDICATION. And by not comfortable, I mean it went into total
shutdown mode, which I discovered is not recommended for a number of reasons.
For starters, you need a functioning brain. Second, you are holding a sharp
needle. Third, a tiny, 50-year old Panamanian woman is not the ideal person to
support a 6-foot tall needle weeny who just made himself pass out while holding
a sharp needle.

Fortunately, as my bottom was sliding out of the
chair, the nurse grabbed and supported my rear end while Laura rather urgently
sought assistance, or so I’m told. It would have been a sight to see if I had
not been unconscious, dreaming of riding a rocket-powered Cheeto while lassoing
cans beer (I’m just guessing here, but such dreams for me seem plausible if not
probable). The MS nurse gently slid me to the floor and in moments I had the
entire neurology department looking in on me as I was shaken awake.

The closest I've ever come to a tattoo. Note the sparkles!

When I came to, it dawned on me that all was fine
with the world. The universe did not implode, Daniel Powter’s song Bad Day was
still topping the charts (oh the irony), and the Cubs didn’t win the World
Series. Over a thousand shots later, I can say with authority that giving yourself
a shot—voluntarily, not under duress or threat—actually is not too hard. Or
that painful. Or that terrifying. Seriously.

What I am trying to get
across: If I can do it, Mr. Needle Overreacting Wimpy Scaredy Cat, you most
certainly can do it. Trust me. Just get your brain wrapped around the idea and
go for it confidently, with purpose, knowing that Dave broke down those
barriers of self-afflicted shot embarrassment years ago. It might take a little
time to get into the swing of things and adjust to the prick, but it’ll happen.
You might screw up once or twice, and that’s okay. You’ve totally got this. All
that said, it might not hurt to do your first poke on a padded surface.

19 comments:

Marina
said...

That beats my first shot experience! I didn't pass out, but did manage to drag the needle on my arm, cut myself, and bleed everywhere! The poor nurse kept saying, "that was really good...great job." with a straight face. She should have been an actress :)

I have to say I hated the needles and switched to Gilenya the second it came out. Of course now I get an infusion, but at least someone else has to get it in me! :)

Hahaha, sorry but that nade me laugh. I honestly never minded needles (thankfully) so Copaxone and Rebif with the Autoject thing was easy. Acthar is an actual vial of meds so that is sort of fun. I can't say I LIKE needles just that I do not mind them. When I was on Tysabri I often let students practice placing and IV in me but after about 5 pricks in attempt to NOT totally fail I had to tell them enough was enough (maybe I should have offered my thoughts on a change of career paths?). I do admit when I was FIRST diagnosed the idea of a self-administered injection either every day, 3 times a week or once a week with a fricken spear was intimidating but yeah, once I did it? Not so bad.

I never wanted to use a needle, and hence it most likely was the biggest fear that kept me off the heroin in my younger days. I actually fainted watching one of my nephews getting an injection in a head wound before being sutured and they had to use the smelling salts on me, too. It wasn't pretty but we all survived. But then as with you, the MS came along and BAM! it was shot time for me. I adjusted and made it a daily routine for three years. Recently I had to do my own injections for blood thinner - those are given in the abdomen - and it felt like riding a bike. I hadn't been injecting for a while but the skills came back quickly. I'm again done with injections and hope they aren't back in my routine any time soon.

9 years ago, at age 56 I was diagnosed with MS - a very late diagnosis. They told me I probably had MS and didn't know it. My tripping and falling was probably the symptoms I never associated with MS, I just thought I was clumsy. I was started on Copaxone injections and stayed on it until last year. The needles were a chore. That also was when it was changed from 7 days to 3 days a week. My symptoms got worse. Foot drop, balance issues, bladder issues became serious. I was switched to Tecfidera. A pill twice a day. So far so good. I still have walking issues. I go to physical therapy but the co-pays are horrible. I try to exercise on my own and am determined to be able to dance at my kids' weddings (which may happen in the next 5 years). I have 3 children and a very supportative husband. I firmly believe that MS is BS!

My "fun" with needles before MS and Copaxone was always fainting having blood drawn, or having IV's placed for my MRI's. There's a special note they put in one's files to lay this fainting person down before a procedure...or bring you some juice after which is pretty sweet.

To work through my fear of needles, my kind and diabetic from age 7 hubby, who, of course, has to take insulin all the time (type 1), suggested I watch him every time he did so. At first it made me nauseous and light headed...eventually I could watch the whole thing...and soon I thought, jeeze, I only had to take one needle a day compared to his many a day...so I've got a better deal!

I was still a bit pale after my first time...but now, 4 years later, I'm a drug injecting pro!

I was "lucky" enough (HA!) to be diagnosed just after Gilenya was approved, so I've never had to medicate with injections. Unfortunately, my relief over that fact lasted for just over a year when I got a staph infection that wouldn't go away. Many months and 10 rounds of antibiotics later, we discovered that the Gilenya had done its job too well and all but wiped out my immune system. And how did we reach that conclusion? With a lymphocyte panel - eight vials and and three BOTTLES of blood in one sitting. Now then, I am THAT patient when it comes to needles - I turn sheet-white and pass out when stuck. I made it through the test with only a little bit of whimpering (the phlebotomist swore she'd never tell) and only had to have that test TWO MORE TIMES in the two months it took me to rebound to a normal white cell count. I can now proudly say that I am able to carry on an intelligible conversation while getting blood drawn and my days of fainting are gone. That being said, I'm on Tecfidera after telling my doc there would be issues with "non-compliance" if she put me on an injectable. Not quite the heart of a lion yet. ☺

Whitney, Laura, et al, I'm so glad to here I'm not the only one who had to overcome shot fears. I will say that giving myself regular injections really helped with my stem cell transplant. Since my immune system was wiped out, I had to get ALL of my childhood immunizations again. Um, that was no fun!

I'm a nurse so shots were never a big deal to me except that I was giving them to others. I started on Copaxone and hated having to take one every day and didn't have good success while doing so. MS got progressively worse. Then I switched to the bigger gun, an IM once a week. What I did find out that most people don't know is this. It is possible to get a needle long enough to penetrate the muscle (1 1/2 inch) and not be any bigger than the needed used for insulin. Yep. a 27g 1 1/2 inch needle perfect for intramuscular injections. Doesn't hurt a bit. All you need to do is get your neurologist to write a script for it and pick them up at the pharmacy. Baxter made them when I was using them years ago. I've been on Tysabri for years now so I guess I got over my fear of any type of needle at this point but hope this info helps.

I was a betaseron pioneer. I was on the waiting list about number 2000 somewhere around 1989. As soon as it was available I signed up. At that time you not only had to stick yourself, you had to mix the powder with the liquid. I "stuck" with it for years. It's so important to just do it no matter what you think about needles. It's not that bad and the alternative might be really bad. I'm so grateful so many treatments are there to choose from.

A perfectly timed post for me. I've managed to avoid the medications requiring shots in these years of MS, struggling to manage the neurological silliness with less stress and a lot of naps. So far, I'm good. Lately, I've been ordered to take B12 shots, and being the not-spending-my-money-on--this type individual I am, I've chosen to given myself the shots. Your post, plus a couple of YouTube "How To" videos made the first effort painless and mostly successful (apparently the $0.30 cheapo disposable syringes often have no seal making it difficult to draw anything out of the bottle) Anyway, I'm glad I found the blog, navigated my first (of many) shot, and lived to tell the tale.

I'm new-ishly diagnosed (4/1/15, unfortunately not the worst April fool's joke ever). I'm JC+ so when I was initially told to take Tecfidera, I flat out refused because of the PML risk, my anxious mind can't take the worry. I just saw a UCSF specialist & he's strongly pushing medication so I'm getting my first shipment of Copaxone on Friday - I've been giving myself B12 shots for a couple months now so I feel ok w/ the needles. I only comment because I feel so deflated after seeing ppl say they only got worse on Copaxone :/ was hoping I'd be able to calm down by currently very active MS.

I'm a little late posting but I need a laugh so I'm going to share this: I shot myself with Copaxone daily for about nine months until my neurologist decided I was allergic to it. So, on to Avonex with it's long, long needle. After the nurse showed me how to prepare it, we practiced injecting an orange. My turn. I prepared the Avonex, stabbed the needle into my thigh and...promptly pulled it back out. The nurse, ever so patient, said "You'll need to keep the needle in until you actually inject the Avonex. Let's try it again."

As a child my mom stated that I'd run to the other side of the car when it was that time of getting a booster shot before school would start. It didn't matter if it was from a medical personnel or dental I flat out would show my hinny in their offices.

started out on Rebif and for 2 1/2 years 99.8% when it was shot night and during the shot I'd start to cry....SO I get and high 5 you for posting!

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About the Blog

This is the official blog of ActiveMSers, which is designed to help, motivate, and inspire those with multiple sclerosis to stay as active as possible—physically, intellectually, and socially—regardless of physical limitations. It is written by founder Dave Bexfield and was started in 2006. Topics include: getting diagnosed, dealing with symptoms, staying active, and hope. Laughter is always encouraged.

About Me

For better or worse, I’ve learned a lot about handling this disease (um, more than many) since I was diagnosed in ’06. And I’ve written about that experience here, where I take a personal look at MS … with a tilted head, raised eyebrow, and a cracked smile. It may be just what the doc ordered when you want an escape from the oh-so-serious world that is multiple sclerosis. (To read more about me, click the About Dave on the left of my blog home page.)